Were the epilepsy patients in those studies TAKING anti-seizure medication at the time the data was collected?
Why do I ask? David was four years old when he started taking anti-seizure medications. Until that day, David would have been described as an observer, likes to play alone, stays close to either mom or dad, quiet, reserved. David started his first anti-seizure medication on a Wednesday. By Sunday, we were physically restraining him into his car seat in order to get a break from the destruction, the aggression, the hyperactivity. He required two adults watching him at all times.
We switched to another medication Monday morning. David’s grandpa stayed with us during that time. He noted the immediate “improvement,” though slight, in David’s behavior when we switched to a different medication. David still required one adult on him at all times, but he wasn’t quite as destructive. I only went to the store three times in six weeks during that time because I couldn’t control him in public. He punched me, screamed, scratched. I had NEVER seen anything like it in my life. (Don’t ask me what we ate…probably a lot of pizza and spaghetti.) Yet, six weeks earlier, my child had been completely different. He had been calm and reserved for four years. Then suddenly, BAM!
Since then, we’ve been on a number of medications, each one with a little different twist to the behavior challenge. Every time I bring it up to a doctor, ANY doctor, I get the same response regarding “these kids” and their “tendency” to have increased susceptibility to these erratic behaviors.
At times, I’ve wanted to scream, “NO! This is NOT my son! This is not some behavior he kept hidden for four years that HAPPENED to appear EXACTLY the same time as he started his anti-seizure medications. My son is not this boy. I knew my son for four years and this is NOT who he is. This is the medication talking.”
David currently takes anywhere from three to four medications to control his seizures. He takes another medication to help him sleep since he wakes up with seizures in the night. And, he takes an ADHD medication to counter the effects of the anti-seizure medications.
Maybe the doctors don’t think it matters whether these behavior challenges come from the medications or from some tendency found in epilepsy patients. But, as a mother it matters to me. It matters desperately to me. A phrase you hear often among parents of epilepsy patients is, “I lost my child.”
What I want more than anything is for David’s seizures to be controlled and for him to be himself again. I want him to be able to control himself. I want him to be able to hold still. I want him to be able to think clearly. I want him to have the quiet in his eyes again.
I am thankful for behavior modification medications that help David calm down, that help David think more clearly, that help David be David again…almost.